#i told myself. i must finish this before my colonoscopy or i will never finish. so here u go 4 am i'm posting it NOW because i'm insane

[roitaminnah]

oh but I hope on my wishing stars

that I could be your love -

I’ve been waiting oh so long

to be your lover

(explodes) I just think about them a lot I think they’re neat. (song is ‘to be your lover’ by the burkharts,, one of the last ones on my ppkm playlist <3)

[suchawonderfullife]

2. My body is a Picasso

I’ve been incredibly fortunate in my journey to try some cutting-edge treatments in Australia, as well as having a very intelligent, compassionate and hard working CFS (chronic fatigue syndrome) specialist on my side. A specialist like that doesn’t come cheap either (very little if anything is covered by medicare so you have to be prepared to be out of pocket by tens if not hundreds of thousands over the years). He’s been my Dr for 8 years and yes he couldn’t get me better, but he has helped me in so many ways. 

He was able to diagnose a multitude of problems within my body through tests regular doctors would not have access to. His understanding and knowledge of CFS and what it does to the body on a cellular level is extraordinary. For those who know who I am talking about, they would agree that he is a brilliant man, who I owe my life to. He got me into private psych hospitals when I was suicidal, he got me in to see him on spur of the moment appointments to treat flu’s and tonsillitis so that a GP didn’t mess me up even more, he diagnosed me with Lyme Disease. Most of what I know about my body and these illnesses are because of him. 

My first 2 years of being chronically ill consisted of spending tens of thousands of dollars on testing and trialling supplements and medications. I did a tonne of research and learnt about “pacing” and other things I could do on my own to help my body repair. I did everything I was supposed to and my health slowly built back up to 80%. I went back to work part-time, back to Uni, I could leave my house almost everyday and things were getting better. Having a diagnosis of CFS without Lyme Disease (because it doesn’t exist in Australia), meant that the cause of my CFS was not being treated and therefore just a ticking time bomb. Of course I didn’t know this and neither did my doctor. 

So when I relapsed HARD, it was a complete shock to my doctor and myself. My heart became so bad I couldn’t shower standing up anymore, I couldn’t lift my arms above my head to wash my own hair, sitting up for longer than 10 minutes at a time was impossible, talking or paying attention to someone speaking to me was exhausting, looking at my phone or a computer made me feel incredibly ill and I was lucky to sleep 2 hours a night. 

It was terrifying to be this ill and not no why. I ended up on 5 injections, 52 tablets, oxygen therapy for 4 hours and drinking litres of special liquids every day. Without all these I would have been far worse than mentioned, but I wasn’t getting any better. 

You wouldn’t believe some of the tests I’ve done. I’ve peed into a huge jug over a 24 hour period and carried it into a pathology (multiple times), I’ve had to poo into a container and scrape pieces of it out to go into special containers and sent that off, I had to pee in complete darkness into a special container covered in foil because if any light hit my urine it would destroy whatever needed to be tested. Boy was that something I’ll never forget. I had to do it in my bedroom as I had blinds to make my room pitch black. Due to how sick I was, I wasn’t well enough to “squat” and hold my own weight, so I needed my mum in there to help hold me and being a girl you can’t really get your pee flowing unless you’re at least squatting. And how do you aim your pee as a female when you’re in total darkness? I’ll leave that one to your imagination. Being in my bedroom and not at a toilet wasn’t triggering whatever part of my brain was needed to tell my bladder to let it out and I possibly had stage fright from having someone standing there waiting for me to “go”. So it took some time and both my mum and I were getting quite frustrated. Then there was the logistics of finding the toilet paper, wiping, putting it into a bag once I’d finished and hoping I didn’t get any on the floor- all in pitch-black darkness. The things parents do for their kids huh? 

For you folks who hate needles, I could have 10 viles taken at each appointment if needed, I have permanent needle marks on my arm where blood gets taken because it happens so often. I also did a spit test, where I had to spit into this test tube and fill it to the top within a certain time frame. It was actually bloody hard to meet that deadline as I wasn’t allowed to drink for ages beforehand so I was dehydrated. My Dr also does a standing test for POTS (postural orthostatic tachycardia syndrome), which is one of my heart conditions. This is really horrible when you’re so sick as standing completely still for 20 minutes can be near impossible. Some patients faint before the 20 minutes are up due to lack of blood flow to their brain. I never fainted luckily, but my blood pressure would drop to something ridiculous like 45/60 and my heart rate would shoot up to 160bpm. I’d become very disoriented and brain-fogged due to oxygen not getting to my brain, my legs would shake with fatigue, I found it difficult to breathe let alone speak (the nurse would keep asking you how you’re feeling) as my heart was beating as if I was running.

Hydrogen breath tests suck too, for people that have done those. You go into a specific clinic, drink this disgusting liquid and then have to sit around for hours and have your breath tested every hour to see if you have an intolerance to foods like lactose and fructose. Being that I am intolerant, drinking a liquid containing things I’m intolerant to gave me gastro like symptoms, running to the toilet throughout my testing and feeling very bloated, nauseous and just yuck. Gastroscopy, colonoscopy, endoscopy, liver & kidney scans (very painful when they’re inflammed), I’ve been lucky enough to have all of those too!  

Then there’s the trialling of all the medications. Because when you have illnesses that are incurable and largely misunderstood, even regarded as not existing, you are essentially a guinea pig. It’s not only that, but every single CFS or Lyme patient has different symptoms and different biologies, which means all our treatments must be individualised and what works for one might not work for another. My body is also very sensitive to medications (it runs in my family) and having a bad reaction to things is common for my mum, brother and I. Every doctors appointment became a Russian roulette of new medications or supplements. “This test shows your body can’t absorb potassium, take 7 of these a day/ we found your stomach can’t produce acid to digest food, take these with every meal/ your mitochondria can’t produce energy, take this injection daily/ you’re chronically dehydrated, drink 2L of this a day/ you’re not producing the hormone that helps you sleep, take this highly addictive sleeping tablet plus these horrible tasting drops just before bed/ your blood pressure is too low, take this beta blocker.” The list just goes on and on. 

My body is like a Picasso- a jumbled mess, a masterful fuck-up, where down is up and up is down (actually this is sounding more like Dr. Suess). Nothing in my body makes sense or works how it should. So when I trial a medication that I react badly to, thats where you get side effects on top of chronic illness, I have to wean off it and start all over again with something different. I’ve tried hundreds of medications, supplements, tinctures, herbal remedies, whatever was recommended to me. Because I will do whatever it takes to get better and to just feel better. But the more I tried, the lower my success rate of finding things that actually worked. 

New doctors wouldn’t understand how seriously complex I am. A kinesiologist put me on some tinctures that made me seriously ill. My CFS Dr was furious because she wouldn’t have understood that putting me THAT b12 concoction would then irritate this part of my illness and he would never have let me take something like that. Then my Dr’s own colleague tried to treat me and she even made me really ill by telling me not to take certain things and trying others things, as she didn’t know my history for the last 6 years and wouldn’t have had time to read through my hundreds of tests and doctors notes over that time. Again my Dr was angry. This doesn’t make her negligent either, we are just so complex and confusing to the majority of the medical community, can you begin to understand why we are shunned as hypochondriacs or put in the “too hard” basket? 

This is what makes my CFS doctor so amazing, he never gives up on us. It can actually be traumatic for patients like myself throughout our fight to get better. We aren’t even heard, listened to or taken seriously. I had to yell and argue with my GP when I first got sick, just to get him to write me a referral to a CFS doctor because he didn’t “believe in it” and said I must just have low iron or something (he already tested it and it was within the spectrum). He even WORKED with a CFS doctor, so he had an easy connection and getting that referral was like extracting teeth. Years into my diagnosis he would then argue with me over prescriptions and why I needed to take certain things. “7 potassium tablets a day, you should be dead!” Yet I’d have my prescription bottles with me for proof. “Wow you’ve lost so much weight, you look great, are you working again now?” Would be his opening line to me as I slowly dragged myself into his office with a walking stick, barely able to stand or hold my own head up. I don’t think he’s a moron either (well he kind of is), but this is the general consensus of how people with my illnesses are treated by the people that should be helping us the most. So if I’m being frank with you here, the majority of the medical community are morons when it comes to illnesses like mine. They’re brilliant in many other ways, but that doesn’t help me or change my story. 

Can you imagine a cancer patient getting a positive test result or scan of a tumour and being told to just take some panadol (pain reliever), get out more and see a psychiatrist? Or you find a lump in your breast and want a scan, your doctor tells you you’ve imagined the lump, probably from stress or depression and that fatigue is because you need to exercise and lose some weight, then your imaginary lump will disappear. Later you find out your body is riddled with cancer, how angry would you be? My body is riddled with billions of deadly and destructive bacteria because of this ignorance and negligence towards certain illnesses. Can you imagine my anger when I was diagnosed with LATE STAGE Lyme Disease at age 24 and I should have been diagnosed in the hospital when I presented very clear symptoms at age 16. Instead the doctors found me a novelty, they kept coming in all night and gawking at me like a medical marvel. “What the hell is wrong with her? Those are some fucked up symptoms!” is what I imagine the talk outside my door would have been. Lyme Disease is more common than HIV/AIDS, it is not a unique or unheard of disease in the medical world. 

Anyway, so I was FINALLY diagnosed with Lyme Disease in 2013, better late than never, through overseas testing that costs upwards of $1,500-$2,000. So again, you better be rich if you want to get anywhere with treating this bastard illness. This is where the fun begins!